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February 10, 2019

A good day for Julia.  She's becoming more easily agitated as she starts to regain alertness.  So now when they do things like her breathing treatment, her heart rate and breaths-per-minute can increase quite a bit for a while.  If they stay elevated for too long, they give her an extra dose of Ativan, but they give her the opportunity to settle herself first.  Heart rate 130s, oxygen saturation high 90s/100, ET 40s/50s, BP 120/78.

She's on all the same medications as before, with Morphine and sedation still being lowered (it's a long process because she's been on them for months).  No medical concerns today: no fever, no spike in vitals.  Her face is SUPER puffy still!  She's my little balloon baby!  Her hair continues to fall out, and she should be getting her head shaved tomorrow.  

Reed's had another miserable day.  I brought him down some of the active charcoal everyone was talking about.  He took it... but he also took it with a new multivitamin I brought him that can make you nauseous without food.  So that wasn't super smart.  We're pretty sure it's food poisoning, so he's just letting it run its course.  But I feel bad... it sucks enough to have food poisoning in your comfy, familiar, private house.  I'm sure the hospital adds another layer of misery, but he won't leave, so that's that.  

But, no amount of food poisoning misery can take away from the MAJOR STEP FORWARD today!!  Reed sent me a video in the middle of the night of Julia peeking open her left eye again all by herself!! It's the SMALLEST TINIEST LITTLEST PEEK, but it's definitely there!  I was feeling good today, so I went down to read and sing to her, and I got to look at this pretty little 1/8th of an eyeball for almost an HOUR before she zonked out =)

We've been waiting for this day for WEEKS!

YouTube video!

[Edit - her wet lashes are from the eye treatment + lubricant that had just happened.]

I also brought down her elephant pacifier and she HAPPILY took it.  She gave it two good sucks and then got tired, but she liked having it rest in her mouth.  So thank you for that suggestion!  We're so "in it" that some common sense things are totally not even crossing our minds.  We're SO HAPPY she can have her pacifiers again - she had them all the time before she got sick and I'm sure it's a huge comfort =) And it might help her work on her swallowing motion.. help her get down some of those yucky meds!  

So all around, a REALLY REALLY good day for the little love <3 

(And I haven't been able to respond to all the Beef and Beer messages - it's a fundraiser my friends arranged for Julia, Saturday the 23rd.  YES! - We are definitely still interested in some raffle items!  If you're local to the Downingtown PA area, or know a local business, or have an online business, and want to donate a basket or gift card, we would be so appreciative!  Please send info to:  Thank you!)

. . . *********************************  ********** Official Links *********** (These are here because of scammers) *********************************

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraiser:  T-shirts -

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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